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my lower esophagus. An experimental treatment of a low dose of radiation was<br />
attempted in the hopes of stimulating my immune system to destroy the mass.<br />
A follow-up CT scan showed the mass only slightly smaller, but a new tumor mass<br />
appeared in the small bowel. This was removed by laparoscopic surgery.<br />
We then proceeded to chemotherapy and after 3 cycles of Cisplatin and VP16, the tumor<br />
was barely identifiable. No other tumor site could be seen.<br />
The residual tumor site was treated <strong>with</strong> radiation and chemotherapy used to enhance<br />
the radiation. This was Taxotere. After 3 doses of the Taxotere I was too sick to continue<br />
taking it and it was stopped.<br />
The result of all this is that, to my knowledge, there is no residual tumor in my body at this<br />
time. That's my story and I'm sticking to it.<br />
I am recovering from the Taxotere gradually. <strong>My</strong> WBC have risen to 2900 from 1900. <strong>My</strong><br />
Hemoglobin has decreased to 9.9 gms, and I was given a shot of Procrit for that. In my<br />
last post, I talked about inability to eat. I have been on TPN (Total Parental Nutrition)<br />
which is basically intravenous feedings.<br />
On the first night after 3 days of 2 liters of fluid replacement and TPN, I developed ankle<br />
swelling. This rapidly resolved <strong>with</strong> elevation of the feet. I was having severe pain and<br />
burning in the lower chest when eating or drinking. This has largely resolved. I have had<br />
episodes of diarrhea, which have not resolved. Food tastes terrible, as if I have anorexia<br />
nervosa. This is due to the chemo and should begin to resolve. I am drinking 2-3 bottles<br />
of Boost Plus daily adding 700-1050 calories per day. Yesterday, I had 2 eggs. Today, I<br />
ate macaroni.<br />
I expect no more than 3 weeks total of TPN.<br />
This TPN is no simple matter. It began <strong>with</strong> delivery of 2 large boxes of material for one<br />
week's supplies. This included 7 bags of the fluid which looks like pale skim milk and has<br />
an odor almost like breast milk. 7 vials each of vitamins and other additives also were<br />
included. These need to be refrigerated and removed 1-2 hours before use. I set an<br />
alarm on my iphone to remind me.<br />
A small infusion pump about the size of a paperback novel provides the power.It runs on<br />
a 9 volt battery which needs replacement daily. A disposable device is to lock in place<br />
which is part of the tubing that goes from the bag to my Medport. The procedure is as<br />
follows. The vitamins are added to the bag. The tubing is locked into the pump. The<br />
pump will often complain that it is not locked correctly. The pump is then primed. The port<br />
is flushed, and then the tubing attached to the port. The infusion is then ready to start.<br />
Needless to say, many things can go wrong. One night, the infusion pump thought it was<br />
still pumping from the previous night's residual and delivered only about 30 cc instead of<br />
1800 cc.<br />
I finally have it figured out, but a person untrained in medical procedures will find it easy<br />
to go wrong.<br />
I also need to check my glucose 4 times a day. The device for that needs little blood. It is<br />
almost painless, but the first night, after 2 tries and error messages, I deferred further<br />
testing to the next day. I think I am still doing something wrong or there is a flaw in the<br />
device as far as sterility is concerned.<br />
More on this in my next post.<br />
I learned about the "Donut Hole" Because I have reached the donut hole in my Medicare<br />
Part D insurance, I am paying the full cost of this TPN. In another post, I hope to discuss<br />
the complexities of the donut hole and the inability to get straight answers from providers,<br />
one of whom told me it would be $4 per day and then called back and said $100 plus<br />
daily not including supplies. Total about $1000 per week. I can afford to pay (in spite of<br />
the falling stock market), but it is a powerful incentive to get off the TPN as soon as<br />
possible.<br />
What happens to those who don't have the money to pay?<br />
<strong>My</strong> <strong>Battle</strong> <strong>with</strong> <strong>Merkel</strong> <strong>Cell</strong> <strong>Cancer</strong><br />
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